Rare Diseases Day | Feb 28 | Theme - Nepal Health Magazine

Rare Disease Day takes place on the Last Day of February i.e Feb 28 annually celebrated with various theme to boost awareness amongst the overall public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the overall public and also seeks to boost awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who features a genuine interest in rare diseases. The official theme for Rare Disesases 2021 is “Rare is many. Rare is strong. Rare is proud.“

Table of Contents

What are Rare Diseases ?

Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that change not only from disease to disease but also from patient to patient affected by an equivalent disease. Relatively common symptoms can hide underlying rare diseases resulting in misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is suffering from the shortage or loss of autonomy thanks to the chronic, progressive, degenerative, and regularly life-threatening aspects of the disease. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. Rare Diseases Day Feb 28 Theme

Key Facts about Rare Diseases ?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world each supported by family, friends and a team of carers that make up the rare disease community.
Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.
Rare diseases currently affect 3.5% – 5.9% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
70% of those genetic rare diseases start in childhood.

How can Rare Diseases Day make an Impact ?

Rare Disease Day raises awareness for the 300 million people living with rare disease round the world and their families and carers.

The long-term explanation for the Rare Disease Day campaign is to realize equitable access to diagnosis, treatment, health and social care and social opportunity for people suffering from a rare disease.

Important progress continues to be made with joint international advocacy efforts for universal health coverage (UHC), part the United Nation’s Sustainable Development Goals (SGDs) to advocate for equitable health systems that meet the requirements of individuals suffering from rare diseases so as to go away nobody behind. Rare Disease Day is that the opportunity advocate for rare diseases as a person’s rights priority at local, national and international level as we work towards a more inclusive society. Rare Disease Day may be a great example of how progress continues to be made, with events being held worldwide annually . Beginning in 2008, when events happened in only 18 countries, Rare Disease Day has taken place per annum since, with events being held in over 100 countries in 2019.

What is Rare diseases ?

Rare diseases are the group of over 6000 diseases that can hide underlying results in misdiagnosis and delaying treatment

What is the theme for Rare Disease Day 2021 ?

The theme for Rare Diseases Day 2021 is “Rare is many, Rare is strong , Rare is Proud “

Still Confuse about Rare diseases , this video may help you

Official Website : https://www.rarediseaseday.org/

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Nirdesh Baral

Hey there, I am Nirdesh Baral, founder of Nepal Health Magazine. I am a Tech geek by passion , Public health practitioner by profession and an Ailurophile by heart and a patriot by birth

www.nepalhealthmag.com

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